Donations of over 500,000 euros: cancer-sick Boy gets life-saving surgery

The 5-year-old Oscar from Worcester (England) is already sick for the second Time with leukemia. Only the participation in a clinical study in Singapore, can save the life of the young. Through a fundraising campaign over 500,000 euros for Oscar were collected.

Already at the beginning of the year, Oscar received a life-saving stem cell transplant. However, the cancer only a few months later came back. The only Chance the Boy has, is the participation in the study in Singapore, reported the Worcester News. In this, the participants of the so-called CAR T-cell therapy. The patient T to be taken from cells in the lab from genetically modified and artificially on the cancer to be trained. In the best case, the body develops a long-lasting immune response against the cancer. To be able to study Finance, started his parents, Olivia and Jamie a fundraiser.

“We want to thank you”

Within a month, more than 500,000 euros were raised for Oscar. “We are overwhelmed. It was poignant to, such as schools, businesses, citizens and even children give their Best, to help us,“ said Oscar’s mother, Olivia. His father, Jamie, added: “We want all of you from the bottom of my heart for your support, thank you.”

“Through the donations, everything will go fast”

In the meantime, enough donations were collected to Finance Oscar’s participation in the study. His Doctors will now have to wait for some test results that will determine the next steps. Jamie said: “The team of Doctors developed a treatment plan for Oscar. Thanks to the donations, everything will go very quickly.“

Twitching eye can be a warning sign for serious diseases

FOCUS Online/Wochit Twitching eye can be a warning sign for serious diseases

How pregnancy can be made more difficult by maternity care’s notions of ‘normal’

Maternity records in the UK have spaces only for the expectant mother and the baby’s father. This inflexibility can cause difficulties for the pregnant person, their partner, and their unborn baby if they do not fit into these boxes.

Over the last decade there has been a significant increase in the number of people conceiving outside of the traditional model of a heterosexual couple, so this affects an increasing number of parents. It’s not known exactly how many lesbian women give birth, but fertility treatment in UK clinics for lesbian couples has increased 15-20% year-on-year for the past decade. In 2016 there were 1,404 live births registered to same-sex female couples.

No data is available for the numbers of trans men (that is, female-to-male transgender people) who give birth in the UK. But some trans men choose to do so, and the number of referrals to gender identity clinics is rising each year.

Research shows that problems occur when heteronormativity—the perception that heterosexuality is the normal, default, or preferred sexual orientation—is communicated either overtly or subtly in the way healthcare staff treat patients, the way leaflets are worded, or the assumptions made in the way administration systems are designed.

This means that co-mothers (the non-birth mothers in lesbian families) may not be recognised as parents, and so miss out on support such as breastfeeding advice for example, and it can leave both pregnant trans men and lesbian co-mothers feeling excluded.

Poor experiences in the run-up to, during and after birth can negatively affect expecting couples emotionally and psychologically in ways that lead to problems for the whole family, including the baby. For example, postnatal depression is common and associated with adverse outcomes for both mother and child. A number of studies, while small scale and qualitative in nature, point to higher incidence of symptoms of postnatal depression among lesbian birth mothers. There are also similarly small scale and qualitative studies that suggest similarly heightened feelings of anxiety and depression among lesbian co-mothers.

For co-mothers in particular, this seems linked to their sense of connection with the baby, and from the extent to which they feel recognised as a parent or not by maternity services, family and friends and wider society. The combined stress of identifying oneself as lesbian or bisexual to healthcare staff, and the attitudes of wider society, alongside the stress of pregnancy generally are greater than that experienced by heterosexual pregnant women, and represent a plausible reason for higher symptoms of postnatal depression among lesbians.

This wider issue of difficulties experienced due to heteronormativity in maternity services is something research suggests exists worldwide.

Discrimination and danger

For a decade I have worked as a doula, offering non-clinical care and support to women during their pregnancy, through labour and birth and in the days and weeks afterwards. In my experience issues have often arisen among those who do not fit the configuration of a heterosexual couple.

Earlier this year, I cared for a pregnant trans man whose unborn baby had a 50:50 chance of having a life-threatening medical condition, and might have needed blood transfusions while still in the womb. The condition can be tested for through a maternal blood sample, which his midwives requested. But the laboratory repeatedly failed to do the right test on the blood sample, assuming that the forms had been mixed up because a maternal test was requested for a patient whose records stated was male. This caused weeks of delay, at a time when, for the baby’s health, every day counted.

In a case from the US, a pregnant trans man who attended hospital with severe stomach pain was not treated urgently, after it was initially assumed he was obese rather than pregnant. As a result, doctors missed that his baby’s umbilical cord had slipped through the cervix before the baby—a rare but serious birth complication that requires an immediate birth by caesarean—and the baby subsequently died.

It is sometimes not patient records or administration systems but individual staff whose heterosexist assumptions mean birth partners are treated differently. For example, it is common for partners to be allowed longer visiting hours on postnatal wards, and encouraged to fetch food from the canteen for their partners. But lesbian partners may be denied access to wards or not allowed to assist their partners because staff assume all partners are male, and that women trying to come into a postnatal ward are merely other visitors.

They may also encounter blatant homophobia or transphobia from those caring for them, such as the midwife who told a new mum that it was “disgusting” that her baby had two mums. Discrimination may be illegal, but there is evidence that covert, harder-to-prove prejudicial treatment continues, including the doctor who found inventive ways not to offer fertility treatment to a lesbian by trying to frighten her, and then by not responding to her queries or passing on her test results. Or the midwife who showed her disapproval of lesbian mums by performing rough vaginal examinations on a woman in labour.

It is more common however that healthcare staff are well-intentioned but lack the skills, confidence and training to provide good care to pregnant lesbians and trans men. The Royal College of Nursing and birth support charity NCT have highlighted the issue, but midwives say that while treating lesbian birth mothers is part of their job, they don’t always know how to treat the co-mother. Some say colleagues struggle to care for pregnant lesbians due to their religious beliefs.

Better data will reveal the reality

In the UK, NHS Trusts do not yet collect data on the gender or sexual orientation of pregnant people and their partners. Because we don’t have this data, we don’t have much information about the statistics for lesbian and trans men’s pregnancy outcomes or birth experiences. Most pregnancy and birth research and most laws and regulations assume babies are created in a heterosexual relationship.

There is no simple solution—substituting “pregnant people” for “pregnant women”, or “partners” for “fathers” on documents may lead to invisibility (especially of women), confusion about whether genetic or social information is required, and is a sticking plaster that doesn’t solve the difficulties they face. We need to understand the problem better: the physical and mental health needs of pregnant lesbians and trans men are hugely under-studied, and so poorly understood.

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Think Before You Pink: What You Need to Know About Pinkwashing

With Breast Cancer Awareness Month quickly approaching in October, things are about to get pink. Really, really pink. That’s because 27 years ago, Evelyn Lauder of the Estée Lauder company and her friend Alexandra Penney decided that pink (particularly pink ribbons) should be the color denoting breast cancer awareness.

Pink has been an international symbol for breast cancer awareness and prevention ever since.

Some people in the breast cancer community love it. Others hate it.

Some people in the breast cancer community love October. Others hate it.

If you don’t have direct experience with breast cancer, you might be reading this and wondering why it matters. From an outside perspective, all of the pink probably seems impressive. What could be wrong with brands and corporations wanting to raise awareness and funds for such an important cause?

Insiders call the tsunami of pink products that descends upon us in October “pinkwashing.”

Pinkwashing, as defined by the Breast Cancer Consortium, is the act of supporting the breast cancer cause or promoting a pink ribbon product while producing, manufacturing, or selling products linked to the disease. In recent years, the definition has expanded to include a darker side of pinkwashing: companies and organizations that exploit breast cancer for profit or public relations.

As the cofounder of a nonprofit organization called The Breasties, an activist for women’s health and empowerment, and a woman who has been affected by breast cancer, I struggle with October.

I love that so many brands go out of their way to show support through turning their window displays pink, coming out with pink products, and running campaigns that support the cause. Each year, these corporations sell thousands of products by associating a pink ribbon with giving back.

However, I can’t help but wonder how much money these corporations spend on these marketing efforts. What if, instead of putting all of that money toward marketing and advertising materials, that money went directly to a nonprofit, a hospital, or breast cancer research?

Don’t get me wrong, awareness is important, but haven’t we all been aware for some time now?

A Brief History of Breast Cancer Awareness

Back in 1974, breast cancer was still a taboo topic that women weren’t supposed to publicly discuss, and awareness was a top priority.

Betty Ford recognized this and played a major role in bringing breast cancer out of the shadows by actually allowing the press into her hospital room and sharing her breast cancer diagnosis with the media. In fact, she was one of the first women to ever publicly talk about her diagnosis. Her openness about her diagnosis was revolutionary, and because of her the number of women getting breast exams increased dramatically, as did the number of women willing to talk about it.

In 1989, Evelyn Lauder, senior corporate vice president of the Estée Lauder Companies, was diagnosed with breast cancer and turned breast cancer awareness into a brand staple, with many other corporations following suit. Evelyn went on to launch a nonprofit, the Breast Cancer Research Foundation (BCRF), and has raised millions of dollars for breast cancer research and drastically increased awareness for the disease, as the Estee Lauder Companies continue to do today.

In 2013, Angelina Jolie put the BRCA gene mutation on the map by sharing her decision to undergo a prophylactic mastectomy in an op-ed published in The New York Times. This catapulted the BRCA gene into the spotlight and was the catalyst for women around the world to undergo genetic testing, and for funding to go toward genetic cancer research.

These are just a few examples of women in the breast cancer community making a difference, and how awareness has evolved over the years. But it seems that in 2019 most of us are aware, and to spend millions of marketing and advertising dollars to raise funds for breast cancer awareness might be missing the mark.

What we need is to raise money for research, community support, educational resources, and hospitals. When a brand or corporation puts their money toward these things, real change happens and it directly impacts those of us who are affected by breast cancer.

After all of these efforts and all of the money that has gone toward awareness, we still do not have a cure for breast cancer. This is why making a direct donation — during October or whenever you can — is so crucial. Research is still needed. Better resources are still needed for women undergoing treatment and surgeries. More information regarding genetic mutations is still needed. Better access to mammograms is still needed.

So now that we are all aware, lets use our money in the most powerful way possible. The best and least stressful way to support a breast cancer charity and make sure you are not duped into supporting a misleading cause or marketing campaign is to donate directly to the charity of your choice. That way you know 100 percent of your donation is going directly toward their cause and mission.

But let’s be realistic: At some point during October, you’re going to be faced with a necessary purchase, and one of the options is going to be pink. Here are a few helpful questions to ask before purchasing any products that support breast cancer awareness, and a few things to think about:

Does any money from this purchase actually go to support breast cancer research, awareness or support? 

This type of partnership between a brand and a nonprofit is called “cause marketing” — when a company’s campaign or product promotion has the purpose of increasing profitability while also giving back to a cause. It is an amazing way for a brand to give back while also profiting, and is especially common in October during breast cancer awareness month. If a brand or corporation has an active give back campaign, they will typically have this clearly outlined for you in the product description or in the fine print below. For example, it should say something along the lines of: “Twenty percent of this purchase will be donated to X charity.”

Make sure the company tells you specifically which charity the money is going toward, not just something vague, like, “Proceeds will be donated to breast cancer awareness!”

If you are struggling to determine where or how much of your purchase is being donated, I highly recommend calling the company of the product you are purchasing to inquire where the funds are going. If the product description states that it is giving back to a specific charity but does not specify how much is being given back, you can call the listed charity partner and speak to them directly about this partnership.

Keep in mind that just because a product has a pink ribbon on it, does not mean it is actually giving back to a charity.

We saw something similar this year with “rainbow-washing” during Pride Month in June, when brands showed their support for the LGBTQ community by adding rainbows to their marketing campaigns, product packaging, and advertising materials, without giving any financial or tangible support to the LGBTQ community. In many ways, this is how pinkwashing began, and many people view it as taking advantage of the current political climate, capitalizing on a cause, without actually having to give back.

Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? 

It is crucial to check that products you purchase, especially when supporting breast cancer awareness, are clean and nontoxic.

Exposure to harmful chemicals and ingredients, like parabens and phthalates, commonly found in cosmetics and personal care products, can increase breast cancer risk. These ingredients are toxic to the body and increase breast cancer risk by imitating estrogen and throwing off the body’s hormonal balance.

I recommend using the Environmental Working Group’s (EWG) Skin Deep website or Healthy Living App to see how products score based on their ingredients’ links to cancer, allergies, and others.

Do you agree with or want to support the specific organization this product or purchase is supporting? What do they do with their money? 

Once you find a campaign that you feel aligned with, it is important to look into what the organization or nonprofit does with their funding to fully understand where your donation is going. You can find exactly what these nonprofits and organizations do with their money by looking up their annual reports (all public information) and ratings on websites like Charity Navigator and GuideStar.

According to Charity Navigator, a 501(c)(3) organization should spend the majority of their funding on the programs and services they exist to provide.

Breast Cancer Nonprofit Organizations That I Support Year-Round

There are a plethora of amazing organizations that are doing incredible things for the breast cancer community that you can support, but here are a few that I truly love and believe in:

BCRF: Breast Cancer Research Foundation

In 1993, Evelyn Lauder founded the Breast Cancer Research to prevent and cure breast cancer by advancing research. To date, the organization has raised hundreds of millions of dollars for breast cancer research.

METAvivor

METAvivor is a nonprofit organization dedicated to funding research for stage 4 breast cancer. According to the organization, only 2 to 5 percent of current breast cancer research funding goes to stage 4 breast cancer. METAvivor works to challenge that by using 100 percent of their donations to fund crucial stage 4 research.

The Breasties

Granted I am a bit biased here as a cofounder of this organization, but we put together free events and wellness retreats for young women affected by breast and reproductive cancers. We are an all-inclusive organization that serves survivors, previvors, carevivors, and thrivers — we want women to know that whatever they are going through, they are not alone. Through community, we bridge the gap between online support and in-person meetups, creating an empowering and fun space to make lifelong friendships.

LBBC: Living Beyond Breast Cancer

Living Beyond Breast Cancer is a 501(c)(3) organization that connects people with trusted, medically vetted, and personalized breast cancer information as well as a community of support.

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